Lyme Disease is still a mystery that puzzles so many including experts in the field. Every doctor I see or talk to has a different opinion about Lyme and it’s co-infections. Every person I talk to has a similar subset of symptoms but also different in many ways. It confuses me a lot so I imagine it confuses many others as well.
I had hoped to start treatment last week after traveling 2.5 hours to a new LLMD but I found out my liver levels were still high and now I am not able to start treatment. I have been off of antibiotics for over 2 months and my body feels it. It is feeling worse and I am getting more and new symptoms. My eyes have gotten worse and my muscles ache constantly as well as my joints. I try to do my best to get through it but sometimes you can’t even fake it.
The doctor started me on Immunotherapy instead until I can treat on antibiotics. He says this will help lessen my body’s inflammatory response as my CRP rate is very high leaving me at high risk for a heart attack. Lyme just attacks and attacks and attacks so many different areas of our bodies. I wake up each morning asking what area will be attacked today.
In addition to the Immunotherapy I am using Essential Oils. I think when you are struggling with a disease of this magnitude you try anything to get well. The oils help with the pain but I am not sure they are helping me. So many people are dealing with this disease and use so many different things but what really gets you well?
I have noticed now I am very fearful and anxietied now, I used to be outgoing and can manage in any situation but my fears are over the top and my anxiety too. I notice alot of people with Lyme deal with this.
Current Symptom List as of 03/05/16
- Eye Floaters including bubbles, long worm looking things, black and gray floaters, speck like bug looking floaters and long threads. I see them daily in all of my vision in both eyes.
- Flashes of light like a camera in my right eye.
- After images, glares, shadows, halos in both eyes.
- Scalp Burning
- Feel like something is crawling in my scalp.
- Neck Pain and Burning
- Popping sound in scalp and neck like bubbles popping
- Ringing in my ears
- Feels like something is squishy in my head
- Eye pain at times it feels like something is popping in my eyes
- Arm numbness, pain, heaviness, tingling
- Leg numbness, pain, heaviness, tingling
- Insomina at night
- Heart Palpatations
- Low Blood Pressure and then High Blood Pressure
- Low Blood Sugar then High Blood Sugar
- Low Potassium
- Upset Stomach
- Nails are turning colors
- Burning in my spine
- Chills in my spine that radiate up to my head
- Dizzy spells
- Pain in lower back
- Sinus all of a sudden feel like allergy attack then its gone or I get allergies for days with no relief
- Been having allergic reactions to food and other things I have never been allergic too before.
- Been getting hives for no reason. Just out of nowhere.
While waiting to get on antibiotics I have started to alternative methods of treatment. I am currently treating with BIE (Bioenergetic Intolerance Elimination), Essential Oils (Topical and diffused) and Herbs (Japanese Knotweed). I was not herxing at first but then the herxing came on with a vengeance. Now I am having new symptoms I did not have before. I am guessing the biofilms are being penetrated and I hope that the Lyme is being killed.
My eyes have felt like they are under a complete attack between throbbing, burning, popping, additional floaters and more it has been wreaking havoc these past 6 days. Also, my head has been feeling so much pressure and a weird creepy crawly feeling. It has been very unpleasant and uncomfortable but I pray that this is going to turn things around until I am able to tolerate antibiotics.
I keep looking for answers and pray that they will come soon. I am finding so many people like me so it helps to know that I am not alone! Us Lymies will get through this together!
#nomorelyme #lymeawareness #lymedisease
Today has been a really trying day, got denied disability now I have to get a lawyer, Lyme Disease is now in my heart and causing irregular heartbeat and low blood pressure so I have to wear a heart monitor for the next few weeks, and upon a routine mammogram they found something of concern and after a few more follow up tests I now have to have a biopsy… But this will not move me.. I am standing in faith that God will not put you through more than you can handle and that I will be healed. I renounce all sickness in his name and know that there is a lesson in all that I am going through.. I probably would have been ready to jump off of a bridge today but some great woman of faith have been counseling me through this along with my family! It’s pouring but the storms will let up soon! In Jesus name! I pray that outloud for me and anyone close to me dealing with pain and affliction right now! Gods got this!
I am video blogging now to talk about my experience with BIE and Essential Oils. I am doing this before I move back to antibiotics in May and get a PICC Line installed. I am hoping to keep the lyme from growing until I have the appointment. Follow my Youtube channel or Click Here for My Online Blog
As I wait each day for my liver to heal, I have started a treatment called BIE, hoping that will be the answer to Lyme Disease. I have met a woman in the area that I live that has had much success with BIE treatment and I am praying that this is for me. After I few weeks I will add in several Essential Oils as well to try to move the healing of Neuro Lyme forward.
The attacks on my body get worse every day. I am dealing with new symptoms such as dizziness, chronic hives, low blood pressure and headaches on top of all the other symptoms I had. I am going to give the BIE treatment until May at which time I will go see a Lyme Doctor in NH and start IV treatment if I am not getting better. I just want to feel whole again. I just want to live again.
It frustrates me that no one acknowledges what Lyme Patients are going through. It sucks that we have to pay so much for care out of pocket. I am losing everything over this and I can rebuild but I worked my whole life to be self sufficient. There needs to be more advocacy. There needs to be a bigger voice. The CDC needs to take this seriously. People are suffering. I am suffering.
I came across this article today while doing Lyme Research. Stars with Lyme Disease
I was shocked to see how many stars from actors to musicians have had Lyme. But you would never know it if you did not do the research. Ashley Olsen is not doing well and the outlook is grim, yet no one is talking about this. I tweeted to the stars mentioned in the article today and asked them to please consider sharing their voice in this fight. Share their voices to get Lyme Disease treatment covered. Share their insight with the CDC.
If it helps one person great. If it helps the thousands of us fighting for our lives even better.